Needs and challenges as perceived by mothers and their hospitalized children having congenital anomalies

M. Ibrahim, H. Khalafallha
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Abstract

Mothers of children with congenital anomalies (CA) have many unique challenges during the process of treatment and concern to meet the needs of their hospitalized children. Aim: the aim of the current study was to assess the needs and challenges as perceived by mothers and their hospitalized children having congenital anomalies. Design: a descriptive exploratory research design was utilized to fit the aim of the current study. Setting: the study was conducted in the pediatric surgical ward in Cairo University Specialized Pediatric Hospital (CUSPH). Sample: A purposive sample of 100 mothers and their children with congenital anomalies participated in the current study. Data collection tools: data was collected using the following tools: A structured interview questionnaire, parent needs scale, children needs questionnaire and children challenges questionnaire. Results: the results revealed that, higher mean score of needs for mothers and their children such as emotional support; communication with medical team, participation in child care, mothers closeness, nutrition, learning and guidance. Higher mean score of challenges for mothers and their children such as health team communication, family acceptance, social stigma, poor mothers bonding, parent stress and financial responsibility. There were statistically significant correlations between mothers’ challenges and their ages, place of residence and educational level, such as knowledge about surgical management, poor mothers bonding, parent stress, stigma, financial challenges and family acceptance. There were statistical significant correlations between children needs such as learning, child and mother closeness, support and guidance with their ages. Conclusion: the study findings of the current study presented higher levels of mother's needs and challenges with their children having congenital anomalies. Recommendation: Empowerment programs and supportive care for mothers and their children with congenital anomalies are mandatory.
患有先天性畸形的母亲及其住院儿童认为的需要和挑战
患有先天性畸形儿童的母亲在治疗过程中面临许多独特的挑战,并关注如何满足住院儿童的需求。目的:本研究的目的是评估患有先天性畸形的母亲及其住院儿童的需求和挑战。设计:采用描述性探索性研究设计,以适应当前研究的目的。环境:本研究在开罗大学儿科专科医院(CUSPH)的儿科外科病房进行。样本:有目的的100名患有先天性异常的母亲及其子女参与了本研究。数据收集工具:使用以下工具收集数据:结构化访谈问卷、家长需求量表、儿童需求问卷和儿童挑战问卷。结果:结果显示,母亲对子女情感支持等需求的平均得分较高;与医疗团队沟通,参与幼儿照顾,母亲亲近,营养,学习和指导。母亲及其子女面临的挑战平均得分更高,如卫生团队沟通、家庭接受、社会耻辱、母亲关系不佳、父母压力和经济责任。母亲面临的挑战与她们的年龄、居住地和教育水平(如手术管理知识、贫困母亲关系、父母压力、耻辱感、经济挑战和家庭接受程度)之间存在统计学上的显著相关性。儿童在学习、亲子亲密、支持和指导等方面的需求与年龄有显著相关。结论:本研究的研究结果表明,患有先天性异常的孩子对母亲的需求和挑战更高。建议:对患有先天性畸形的母亲及其子女的赋权方案和支持性护理是强制性的。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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